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Information for Mesothelioma Caregivers

The Role of the Caregiver

With a loved one's diagnosis of mesothelioma, the closest family member is often catapulted into the new role of caregiver. A caregiver, by definition, is an unpaid family member or friend that provides medical and emotional support to a patient. A caregiver generally provides the following care:

• Administer drugs to patient
• Shop and prepare food
• Help patient eat
• Help with daily tasks, such as walking, bathing, using the restroom, etc.

• Household chores, such as paying laundry, cleaning, paying bills
• Chauffeur patient to and from appointments
• Communicate with doctors and nurses and guide patient's medical care

These tasks are time-consuming and often physically and emotionally demanding. They easily interfere with the caregiver's own life and work, and as a result can take a toll on the caregiver. However, research shows that caregivers who take care of their own needs and get the information, help, and support they require are better prepared to take care of their loved ones. Below, we have prepared information that we believe can be of help to caregivers. For any questions not addressed on this page, and for caregiver support group information, please e-mail info@curemeso.org.

Webinars for Caregivers

Medical and Palliative Care Decisions
This webinar is to aid caregivers in the decision-making process after a love one has been diagnosed with mesothelioma.

Self-Care for Caregivers
This webinar tackles the issue of caring for oneself while acting as caregiver for a loved one with mesothelioma.

Communicating with doctors as a caregiver

It is extremely important for caregivers to be in equally good communication with both their loved ones and doctors. Due to patient confidentiality, a doctor may not be allowed to talk with the caregiver unless the patient is also present. One solution to this problem is to submit a signed consent form from the patient, giving the doctor permission to speak about their medical care and options directly to the caregiver.

When dealing with mesothelioma in particular, a patient is usually in the care of several doctors at any one time. It is important to find out which doctor is the main point of contact and to stay informed about every aspect of the patient’s medical care. This includes asking about medications and side effects, what a patient can eat or drink, and questions about next steps. A typical doctor’s visit is around 15 minutes so it is a good idea to have a list of questions before the doctor’s appointment to make sure that all questions are being answered. This will help ensure that you receive all answers before you leave. Some doctors have a hard time communicating in words that a patient and caregiver can understand.Do not be afraid to ask a doctor to explain something that you do not understand.

An excellent question to ask a doctor during a visit is: When should we seek medical help outside of office hours?A patient with mesothelioma may experience side-effects that could require medical attention. Ask a doctor what to expect and when it is appropriate to seek medical help.

Taking Care of Yourself While Caring for Another

It is essential for a caregiver to take care of oneself, and not just the patient. A caregiver cannot provide consistent and ongoing support and care unless their own needs are being met.

Caregivers are prone to feeling alone, helpless, guilty, confused, or angry. These feelings in small doses are normal, but when they become overwhelming, they may cause depression. Some symptoms of depression include extreme fatigue, anger, lack of energy, and frequent crying. Feelings of depression shouldn't be viewed as a sign of weakness, rather a sign that something is out of balance and needs addressing.

Some ways to relieve symptoms of depression include: getting support from a close family member of friend; engaging in physical activity; eating balanced meals; seeking spiritual support; and writing in a journal, meditating, or spending time in nature.

Additional Resources:
• On our blog, our Executive Director Mary Hesdorffer, NP, provides advice for caregivers experiencing burnout: "Caregiver Burnout: The Unspoken Suffering of the Caregiver"

• We recommend reading through the National Cancer Institute's booklet for caregivers: "When Someone You Love is Being Treated for Cancer"

Respite Care for Caregivers

Caregivers should try to take time for themselves by getting away from the patient and the house every day. This can become a challenge when a patient needs to be cared for 24/7. This is where respite care comes into play. Respite care is the term used to describe short-term, temporary relief for those who are caring for family members who might otherwise need professional aid. Respite is a short break from the exhausting challenges of being a caregiver. It has been shown to help keep family caregivers healthy and improve their sense of well-being.

A respite care provider is trained to take care of a patient's needs and can come for 1-2 hours a day to watch over the patient. A respite care provider must be told when medical help should be contacted. This will allow the caregiver to have some time to take care of their own needs as well as errands. Respite care providers can be found through local civic groups, churches, or community organizations. Another option for respite care is to have a patient stay in a local facility for a week or two to allow time for the caregiver. These facilities provide trained medical help on staff to cover a patient's needs and administer drugs. They are sometimes also covered by various insurance plans. Check with Medicare and Medicaid to see if respite care is covered. Find home healthcare options here.

Meso-Connect and Support Groups

Through our Meso-Connect program, we identify and connect you with members of our mesothelioma community who "have been there, and have done that." Caregivers can use this program to get in touch with other mesothelioma caregivers who have been through, or are going through, the same situation. Register for Meso-Connect here.

We also offer support groups for caregivers via telephone conference calls and private online groups through Facebook. Click here to learn more about the groups offered and view the schedule of upcoming sessions.

Caregiving With Children

Children in the household who are too young to help can often feel abandoned and alone. It is important for a caregiver to spend time with children and talk over their fears and concerns. Keeping routines during this time is important in maintaining a semblance of normalcy, but doings so can become overwhelming for the caregiver. Seeking help from friends, family members and community members is recommended.

If a child becomes upset, angry, withdrawn or drastically changes behaviors, it is essential for the caregiver to let them know that their loved one is working to get better and that all the best resources and treatment avenues are being pursued. Allowing the child to participate in information-sharing will make him/her feel more control over the situation.

Additional Resources for Caregivers

Medicare Basics: A Guide for Family and Friends of People with Medicare

A Guide to the Family and Medical Leave Act (FMLA)